Community Champion
Posts: 721
Registered: ‎26-06-2016

Re: Herceptin without chemotherapy

Hello Adele,

 

I had my surgery first BUT mine was tiny 3mm or as big as a peppercorn. If your tumour is large compared to your breast then many surgeons want you to get the chemo first because then you might have less invasive surgery. Sometimes the chemo makes the cancer melt away completely and and other times it shrinks it to a great extent. 

Member
Posts: 9
Registered: ‎05-03-2018

Re: Herceptin without chemotherapy

Yorkie hi

Chemo+Her prior to or after Mastectomy

I have had similar indentical diagnosis

ER+ 4 PR 0 HER2+ 3+

Invasive Grade 3 , DCIS Grade 3 not exercised yet, but the WLE didnt deliver clear margins and as the DCIS was not 16mm as advised but  32mm  will be requiring further surgery but after treatment

The plan always has been to have Chemo + Herceptain and it's taking ages already 30 days  and yet to be n by an Oncologist such a challenge to get appointment so unlikely will get chemo within 50 days. Am at a Central London Hospital

My Question to you and anyone else is did you have your Chemo+Herceptain prior to Mastectomy or after

Thanks

 

Member
Posts: 10
Registered: ‎23-01-2017

Re: Herceptin without chemotherapy

Really sorry to hear this Shona and wish you best of luck with your treatment going forward!

I am on my last herceptin and have followed your exact path - altthough I had a mascteomy and reconstruction. It's only last week I realised that i could get a reocurrance in my reconstruction so will need to be really vigilant

Member
Posts: 5
Registered: ‎10-10-2017

Re: Herceptin without chemotherapy

I don't want to be the voice of pessimism here but I should point out that Herceptin doesn't always guarantee a successful treatment. I've had chemo and 18 herceptin injections for my Her2 positive tumour. My tumour was completely destroyed by the chemo and I had a lumpectomy. The histology confirmed there were no tumour cells left in the tissue and my lymph nodes were all clear. The week before my last Herceptin injection, I was very suspicious that all was not well and I have just been told that the cancer has returned. It has not responded at all to Herceptin. To say I was devastated is an understatement but I also didn't realise there was the possibility that the tumour cells wouldn't respond to Herceptin. I don't recollect that ever being mentioned so I guess I just assumed it always worked. So I'm now back on this roller coaster journey. I really wanted a mastectomy first time round but because my reponse to chemo had been so good, the surgeon talked me out of it. Hindsight is a great thing but sometimes you need to really go with your gut instinct.

Member
Posts: 4
Registered: ‎06-12-2017

Re: Herceptin without chemotherapy

Yes, agreed. CaN i ask where you went and your oncologist. I cant return to my local as treatment was appaulling. I would very much like to have E/C alongside herceptin but told thats not possible at my hospital....are you in london?
Member
Posts: 4
Registered: ‎06-12-2017

Re: Herceptin without chemotherapy

It’s a very though time and so sorry to hear, but feel certain the Dr has made the right choice for your mum...
Can i ask what hospital your mum is. I def would llike to have e/c with herceptin as do not want full dose chemo. I need to find an oncologist that might help m get what i would like.
Member
Posts: 4
Registered: ‎06-12-2017

Re: Herceptin without chemotherapy

Herceptin without Chemo

I’ve read a couple of posts where people have had Electrochemotherapy with herceptin. My cancer is on the chest wall, and i asked about this but was told I could not have E/C 

Can someone tell me at which hospital, consultant where someone has managed to get electro chemotherapy alongside herceptin. The treatment at my local hospital has been terrible with very arrogant oncologist who wont even follow me up now. I have to see someone else I know, but so desperately want to find someone sympathetic to my wishes and beliefs

I do not want full dose chemo which is the only thing being offered to be me at the moment

 

Member
Posts: 11
Registered: ‎02-01-2018

Re: Herceptin without chemotherapy

I was also grateful of 18 doses of Herceptin and had no heart problems. I had my last dose 5 weeks ago.
Member
Posts: 11
Registered: ‎02-01-2018

Re: Herceptin without chemotherapy

Please try and remember that the doctors dont give you chemotherapy for the fun of it, it costs the NHS thousands.  The aim is to keep you alive.  If they suggest it then go for it.  Chemo is not pleasant for any one but it can be done.  Side effects vary greatly between people.  I had a bad time with it but am still pleased i had it as it has given me a better chance of life.  Be grateful it has been offered.  18 doses of Herceptin is not a walk in the park either, you might as well get the whole lot over with, give yourself the best chance possible and get on with life.

Community Champion
Posts: 721
Registered: ‎26-06-2016

Re: Herceptin without chemotherapy

There have been trials which show that 3 injections (so 9 weeks if 1 every 3 weeks) is as good as the standard 18 injections. In some parts of the world that is what you get.

 

Also there are trials going on right now in the UK to see of 9 injections so half as much treatment offer the same advantage as the standard 18 injections.

 

The cost and the fact that it can damage your heart are reasons for giving less. There is not much point in making you free of cancer if you die from a bad heart after all.

 

So there are lots of very clever people all over the world looking into all of these treatments to see what is the best for most people at a reasonable cost.

 

Community Champion
Posts: 721
Registered: ‎26-06-2016

Re: Herceptin without chemotherapy

Herceptin cannot be prescribed without at least some chemo. The reason for this is because chemo was in place long before Herceptin and it was used alongside chemo NOT INSTEAD of chemo when it was being trialled. This was because if it did not work by itself then those women not given chemo would have advanced too far and likely be dead because they would have been given a drug which did not work.

 

Those were the ethics prevailing at the time and those ethics are still prevailing now. This is because there have not been enough trials of Herceptin alone on sufficient numbers of women worldwide to enable it to be offered without chemo. It might work for early stages but how early? It might work for some age groups or ethnicity's but which ones? It might work if you are triple positive and need tomoxifen (or similar) but it might not. There are too many questions and not enough answers.

 

The bottom line is they don't know if it works without chemo but they do know that it works with chemo.

Member
Posts: 7
Registered: ‎01-02-2018

Re: Herceptin without chemotherapy

Heart scan is because of damage of herceptin...can be aggravated by type of chemo...
Member
Posts: 7
Registered: ‎01-02-2018

Re: Herceptin without chemotherapy

Hi BKK girl
I have the same aims as you it seems.. I am trying to avoid chemo..herceptin only seems to have been licenced with chemo as it was tested on final stage Breast cancer patients receiving chemo... it helped so that's how it is licenced....but it appears to work as well for 9weeks as for 12months..
I can't seem to find much data on its efficacy without chemo..

BUT we have been doing chemo for years... and it doesn't appear to do more than kill your cells and damage your immune system...Yet recent research shows our immune systems are vital to fight cancer...hence the big money research into immune type treatments..
Member
Posts: 7
Registered: ‎01-02-2018

Re: Herceptin without chemotherapy

Hi there..I am trying to get herceptin without chemo...
Some of these posts appear to indicate it can be done...
I live in Wales UK and would be grateful for any information.
Thank you
HER2+, oestrogen and progesterone positive...1cm tumour.
By the way I went for an ultrasound and mammogram as I had a niggly pain in the side of my left breast. Both clear 12 months ago..he said I had very dense breast tissue for my age (63), more like that of a 40 year old.
He decided one more mammogram 12 months later..(Dec 2017). I had the odd pain but not often. The mammogram showed changes to micro-calcifications. He did an ultrasound and there it was...same place as the pain..taller than it was wide, irregular and with a base shadow. Needle biopsy for tests but I knew the shape!!
My point is why do they say it is not painful...I have no discernable lump but the pains/swollen feeling and this tumour are in an identical place...
Member
Posts: 11
Registered: ‎02-01-2018

Re: Herceptin without chemotherapy

I was diagnosed Her2 + with no lymph node involvement. It was aggressive grade 3 so I had EC chemo followed with what was supposed to be 9 weekly paclitaxol but I had an allergic reaction to the 2 nd dose so had 3 x3 weekly Abraxane chemo .  I started on Herceptin the day before I started the Paclitaxol chemo and this week I am about to have my last of a total of 18 doses.  I had a mastectomy and 3 weeks of radiotherapy too. Everyone responds differently to treatment.  You have to trust your oncologist.

Highlighted
Member
Posts: 23
Registered: ‎20-10-2017

Re: Herceptin without chemotherapy

****** typo on the below

I've seen and read that herceptin and palitaxel are given together!
Member
Posts: 23
Registered: ‎20-10-2017

Re: Herceptin without chemotherapy

Hi gsk

Not too informed on this but can shed some input in relation to what my mum is going through and has been told...

Mum diagnosed 1.5cm invasive grade 3 her2+. Lumpsectory on 15th nov, margins clear no nodes. Met with oncology today - herceptin cannot be offered without chemo. I am told all her2+ needs chemo, to keep the cancer from coming back and then inconjunction with the apparent wonder drug herceptin. I asked about why not just on its own and got told only progress made reg trials was the time reduced to one year - no trials (over here I assume) for it alone so I assume they are a few years off.

Mum has been offered Paclitaxel weekly for 12 weeks and then 3 weeks herceptin for a year, so they at some point J think add the herceptin in with the chemo. Not sure if mum should have the EC chemo - as it's geade 3 but based on the above the senior consultant said she was pretty sure taxol and herceptin would be enough ...with less side effects??? These are the experts and I've read online these two drugs aren't given together (Paclitaxel and herceptin) I think it's because they give a smaller dose as hey are giving the herceptin but it's one case by case basis and they evaluate everything from size, nodes, type etc.

Mum has to have a heart scan )everyone has this wth chemo apparently and then start second week of jan. Keep thinking will every added week make a difference?? Consultant said no and said to remember main thing is the C is out and this is the "insurance" still hard though but they were helpful answering every question we had! And had a few...

Seems silly for mum to go through Christmas with that if she can delay it a few weeks.

Hope everyone is ok. Just the second part of the journey this dreaded chemo, but positive attitude they say helps and we are trying to do that for mum xxxxx
gkf
Member
Posts: 1
Registered: ‎01-12-2017

Re: Herceptin without chemotherapy

Hi, I was dx with IDC, Her2+, 1.5 cm in left breast and had a lumpectomy.  I am curious to know if you did have Herceptin only rx and how the therapy affected you? 

Hope you are doing well!

Member
Posts: 1
Registered: ‎17-10-2017

Re: Herceptin without chemotherapy

Hi Jig,

I've been looking for anyone who received Herceptin w/o chemotherapy. There is also some research showing 9 weeks of Herceptin has the same results as 1 year, decreasing the negative impact.

Can you please share more? Where are you located? 

Thank you so much. 

 

Jlg
Member
Posts: 1
Registered: ‎07-07-2017

Re: Herceptin without chemotherapy

I was diagnosed with her2+  Brest cancer I January 2013.  I had a bilateral mastectomy.  I didn't have cancer in my lymph nodes  in July of that year after a lot of discussion and study, I choice herceptin alone gore one year.  I had treatments every 3 weeks.  I had a great oncologist who spent a lot of time with me going through my option.  As of today, I'm doing great.  Every person is different and medicine is definitely not an exact science.  Trust your gut, get other opinions and, as my doctor told me, stay off of the internet.  It will drive you nuts!